About us

What is IF?

The International Federation for Spina Bifida and Hydrocephalus (IF) was founded by people with spina bifida and hydrocephalus (SBH) and their families in 1979. Over the years, it has grown from a voluntary association into a professional disabled people’s organisation (DPO) with global coverage, democratic structure and transparent and accountable processes.

The majority of IF member organisations are led and governed by adults with SBH or parents of children with SBH. Children are active participants in our members’ activities: they are involved in child-led activities, training workshops on independence and holiday camps. Nowadays, many young people with SBH have taken over the leadership of their organisations. In most cases, IF members choose close cooperation with medical and education professionals and researchers, given the importance of these professions to children and adults with SBH for their survival and development.

IF’s fast-growing membership now includes 60 member organisations in Africa, Australia, the Americas, Asia and Europe. Membership of IF is open to all nationally registered organisations that share IF’s vision and mission and actively involve people with SBH in their work.

In its work, IF is supported by the Global Expert Panel(GEP) and its Network. The Network is a multidisciplinary scientific advisory body to IF Board of directors. GEP a 7-person steering group of the wider Network. The individual GEP members are IF spokespersons on various topics, and are respected global experts in their field of expertise in top-level institutions.

PUSH! Global Alliance has grown out of the informal PUSH community of individuals and professionals, and now includes a wide range of global institutional stakeholders working together to accelerate spina bifida and hydrocephalus prevention, and to realize optimal care and a better quality of life for those affected. The PUSH! Global Alliance features Global Report Cards for Spina Bifida and Hydrocephalus Prevention and Care that provide meaningful, tangible information to help countries and organisations to move to action, further efforts and accelerate change.

The International Federation for Spina Biﬁda and Hydrocephalus holds Special Consultative Status at the Economic and Social Council of the United Nations. Through the FRC programme, IF holds a privileged relationship with the European Commission. IF is a founding member of Child Help, a Belgian organisation that focuses on development cooperation. IF is part of the Executive Management Team of the Food Fortiﬁcation Initiative (FFI). IF is represented at the Board of the European Disability Forum (EDF) and the Board of EURORDIS.

IF Award

Each year, the International Federation for Spina Bifida and Hydrocephalus (IF) presents the IF Award to an individual or organisation in recognition of their special contribution to the service of people with disabilities in general or to people with Hydrocephalus and Spina Bifida in particular. The award itself is in the form of a bronze statue. It was designed and created for IF by the Belgian artist Pierre Mertens. The current IF Award is a statue representing an Etruscan woman with a hole in her back and abdomen - the symbol of hope. It is representing both the pregnancy in danger by prenatal diagnoses as well as the disability.